Learning how to live amidst challenges and maintain health, sanity, creativity and balance.

Wednesday, 29 April 2015

Heni's Story.... PART 1

"Our little Henibean"

Life was ticking along just fine....I had a lovely energetic one and half year old son keeping me busy and on my toes and we were looking forward with anticipation and excitement to the birth of our next child within the year. It was at my 18 week scan that doubt started to creep in and that bit by bit life stated to turn upside down. Initially, it was a concern that the fetus' brain had an area (choroid plexus) in which they had found a number of cysts. I was told not to worry as "they usually disappear by 24-27 weeks"..... what I wasn't told was that choroid plexus cysts can be a marker for a chromosome abnormality. For the next 10 weeks I diligently returned to the antenatal clinic for regular check to see if they had gone, however by 28 weeks they were still fully present! University college hospital at that time had better equipment to do more thorough scans and so they packed us off to London to see the consultant for a 30 week appointment. He, hopefully would be able to tell us more about what could be the problem and give us the information we needed.That day in London we were told that they were 90% certain that our baby had something called Edwards Syndrome or Trisomy 18 and told that these babies were "incompatible with life" and usually die. We could opt to have an amniocentesis that could confirm this diagnosis or just wait it out and highly likely have a still born baby. We were told that "IF" the baby was born alive it would die very quickly. They even showed us various text book pictures of the tiny Edwards babies which looked like they had indeed been taken after a silent birth. No hope. Matter of fact!In one instant our hopes and dreams and pictures of life with this child were torn apart, shredded in to tiny pieces.... and stomped on. The future we envisioned no longer possible, replaced with a huge gaping chasm of "unknown" ahead. It seems looking back,
that it was one of those times where time seems to stand still or slow
down and you feel like you are not really present but experiencing it as
an observer.... from a distance. A kind of numbness.... that it's not
actually happening to you but to someone else. We were given half an hour to think about it..... we walked round some of the shops near the hospital in a daze, crying, talking, wondering and praying silently for guidance as to what to do. By the time we returned to the hospital we had decided to have the amnio. If our baby did have Trisomy 18 we wanted to be 100% sure.....What was supposed to be a two minute procedure somehow lasted twenty
minutes plus. A quick injection through the abdomen in to the amniotic
fluid to collect a sample was replaced by a lengthy stabbing session of
the chord...the only thing I can think of was that the consultant was trying to
attempt to induce a miscarriage right there. To this day I believe that he took it upon himself to rid us of OUR little girl. Thankfully
our baby was determined to make it in to this life and survived the
ordeal. We had made the decision that if SHE survived to birth we wanted her to be surrounded by those who loved her and in a place we could all feel comfortable... we wanted to love her as long as we could and if she were to die .....to die in peace... at home.It was a long wait. Every day filled with not knowing. Wondering if the movements I felt inside of me would be the last ones. Forty weeks came and went with no sign of arrival. We even moved house on the day she was due to arrive....crazy or what? Thankfully she knew the best time to come...41, 42, still no sign. The midwives were all extremely supportive of our decision to wait it out and let whatever was meant ...just be... and so finally at 43 weeks our baby decided to make an entrance in to our lives. After only 2 and 1/2 hours of intense labour she made her first appearance.... a teeny 5 lb beautiful girl who was very much alive...but we wondered...for how long?

Here are some photos of her first few hours...

If you would like to find out what happens next you can read Heni's story part 2 here& Heni's story part 3 hereJx

Jade, I have spent the last hour reading through Heni's story. Thank you for sharing, thank you for being transparent, and thank you for sharing Heni with us. God made her a survivor despite what statistics and doctors may have predicted. So, she is 21 now? or close to it depending on her birthday? She is the same age as my daughter. From reading some of your journey, I know it hasn't always been easy, but God has given you the grace to make it day to day. I pray you feel His peace and grace continually. I am so happy to have found your blog today.

Thank you so much Debbie for you kind words and encouragement. It certainly has been a day to day endeavour. I never thought we would make it this far but she still graces our lives today with her smiles. Yes she will be 21 in July!

Hi Jade. My heart fluttered when I read your family's story here (and on subsequent pages). What a beautiful, fighting girl you have! A friend of mine has walked with T18's shadow looming large. Her daughter, Everly, was a T18 baby. She lived for 11 months. Now she lives in heaven. If you're interested in connecting with another T18 family (they have a nonprofit to support families and equipment for hospitals for T18 babies), check out Crystal's story. Her web site/contact is at the end if it's of interest. Regardless, you're a beautiful mama overflowing with love. My guess is that you have a daughter who is similar. ;-) Praise God. I meandered here via #livefreeThursday. http://kristiwoods.net/2016/03/yourstory-crystal-hopkins/

I am so glad you stopped by today Kristi. I have just been to the link you gave and read Crystals story. It's beautifully written and my heart just went out to her. I hope that I can be as brave and courageous and filled with so much faith when Henis time to return home arrives. Im grateful that you were guided here today. Xx